A Reader named Anne writes: "I discovered my gluten sensitivity while trying to figure out something to help or reverse my small fiber peripheral neuropathy. My PN was progressing up my arms and legs. My feet were extremely painful - I had to sleep with them dangling off the side of the bed so nothing would touch them. I was also slightly off-balance, but the doctor said I was not ataxic."
"After going GF [gluten-free], I have seen regression in my PN. My arms and legs no longer tingle. I can sleep with my feet under the covers. I no longer limp and my balance is better. I doubt my feet will ever feel normal - too much damage. But they are so much better."
"Interesting, my son started complaining of foot pain when he was 20. He is now GF and says he no longer has any foot pain. Was that the start of PN? I wonder that as my foot pain began when I was 20. PN was not diagnosed until I was in my 50's. I was told it was planter fasciitis. Is there a connection between gluten and PF [peripheral neuropathy]?"
"I used Enterolab to confirm my gluten sensitivity. I have been gluten free for 5 years and the change in my health has been absolutely amazing. No more fatigue and depression. Improvement in peripheral neuropathy. Eyes and mouth are no longer dry. The list of improvements is very long."
"I stumbled across your blog this morning - nice find, will bookmark it. It is refreshing to find more doctors who are looking at the whole spectrum of gluten sensitivity and not just celiac disease. When will your book become available?"
I love Anne’s question and comment on her Peripheral Neuropathy (PN) because it brought Chapter 5 of my book to life. In Chapter 5 we discuss the various symptoms associated with gluten’s affect on a person’s nervous system. There are many such symptoms including clumsiness, imbalance, numbness, pain, memory and attention difficulty and mood disturbances. Two of these are exactly what Anne and her son experienced – pain of their extremities and imbalance.
In an effort to clarify why she noticed the benefits she did from removing gluten from her diet, please enjoy another snippet from our upcoming book:
Clumsiness and Imbalance
While this may not be the most common symptom of the nervous system related to gluten intolerance, it certainly is the most researched area. In medical circles, the term “ataxia” is used to describe poor coordination and balance. It can affect your walking, your ability to stand, or even your arms or legs in isolation. While many systems contribute to your balance (your inner ear, your vision, your sensations of your feet on the ground, etc.), your brain is the location that organizes all of this information and navigates your movements precisely. More specifically, the cerebellum, which is a part in the back of your brain, is the “balance control center.”
Some examiners claim that ataxia is one of the most common disorders produced by gluten in relationship to our nervous system. Poor coordination and clumsiness does occur with gluten intolerance and affects children as well as adults. But how does gluten cause our brains to function improperly and cause this imbalance? Evidence suggests that it is all due to the immune system’s reaction to gluten itself.
In your cerebellum (a part of the brain that plays an important role in the integration of sensation and control of movement), there are special cells called Purkinje cells. These cells are found in your cerebellum and are the main components of the “balancing center.” In patients with gluten sensitivity, it has been shown that these individuals have antibodies against these Purkinje cells. The antibodies made against gluten (anti-gliadin antibodies) cross-react against these Purkinje cells. What this means is that in a person who is genetically at-risk for gluten sensitivity, gluten induces an immune attack against the protein gliadin, and this antibody not only attacks gliadin, but also attacks tissues far away from the intestines. In this case, through the bloodstream, these antibodies travel to the cerebellum and attack the Purkinje cells. As these cells become inflamed from the immune attack, the ability to coordinate all the “balance information” is impaired. Symptoms of poor balance and coordination then result.
To further demonstrate this point, another study out of Britain examined 224 people with ataxia disorders. Some had an inherited disorder of ataxia, some had ataxia combined with other neurologic symptoms, and some simply had ataxia without known cause. Of those that were without known cause, 41 percent were found to have anti-gliadin antibodies supporting gluten sensitivity as a cause. Also, when looking at all the patients in these groups that were positive for these antibodies, 79 percent had “small” cerebellums on MRI testing. The gluten antibodies that had been generated from the immune system’s reaction were not only directed against gluten proteins, but also against the cerebellum and its Purkinje cells. Over time, the size of the cerebellum had decreased.
But the proof is always in the pudding. What happens if someone with poor balance is taken off gluten? In another study, ten patients with headaches and/or clumsiness were placed on a gluten-free diet. Over time, nine of the ten showed a beneficial response in all symptoms. The evidence is overwhelming. The presence of gluten antibodies, shrinkage of the cerebellum and the dramatic response to dietary change all support gluten as the cause. Yet despite these obvious factors indicating gluten (a dietary component) as the root cause, the majority of the time no digestive symptoms exist. In more than one study in patients with ataxia, other changes in the brain by MRI testing demonstrate inflammation and small areas of tissue damage. These changes occur silently without us even knowing it until they grow large enough to create symptoms. But by the time symptoms occur, the inflammation has been evolving over a long time for most people. For example, in individuals with small silent strokes to the brain where symptoms are absent, eventually enough tissue can be damaged to cause memory problems and dementia. By the time this is diagnosed, often more than 20 percent of brain is already damaged!
Think of your nervous system as an electrical circuit where information flows to and from the brain and spinal cord. Thousands of nerves traverse your body telling your muscles to move a certain way, and several sensors send information about touch, movement, pressure, temperature and pain back to your brain as well. When these nerves are unable to function well, “false” information can be sent back to the brain and cause many perceived symptoms. Of these, numbness, tingling and pain are the most common. If you have ever slept on your arm incorrectly, you know how uncomfortable the symptoms of numbness and tingling can be. Imagine having this all the time! If you slept in a poor position, as soon as you adjust and move, the compression on the nerve is released and the numbness fades away. In cases where the nerves are being damaged, however, changing your position does not help. This is called “neuropathy.”
Neuropathy can be due to many causes, and diabetes is the most common known cause. Unfortunately, the majority of neuropathies are without a known cause. In addition to ataxia, neuropathy is fairly well studied in relationship to gluten and is a common neurologic manifestation of gluten intolerance. The mechanism is related to the immune system. Antibodies directed against gliadin or gluten can result in cross-reactions against proteins or fibers of the nerves causing damage. Research supports that these antibodies have specific cross-reactivity with myelin (insulating layer around nerves composed of protein and fat) and neurofilaments (fibers that make up the nerve cell). Both of these are key components of nerves that relate to sensation and movement.
Depending on which portion and which set of nerves are affected will determine your symptoms. For instance, if nerves that sense temperature changes are attacked by gluten-related immune antibodies, then odd sensations of hot, cold or pain may develop. Or if nerves that sense pressure and touch are involved, unusual pressure sensations or deep pain can result. While it may seem that something which is hot, cold, or painful is affecting an area of your body, there is really nothing there. But your brain’s perception is purely based on what the nerves tell it. So, if they are signaling “bad” information because they are inflamed or injured, you still feel the pain even though nothing painful is there. In this way, it is like a short circuit in a faulty monitor. The monitor’s alarm is going off signaling a problem, everyone is hurrying to fix a problem, but no problem with the system is present. The problem is in the monitor, or in this case, the nerve itself.
How commonly does gluten cause these “neuropathy” problems? More often than you might think. In a study of 27 children with Celiac disease, 11 percent had some form of neurologic disorder. Neuropathy was the most common. Another examined nine patients with confirmed Celiac disease, and several different types of neuropathies were documented in this group affecting many different sorts of nerves. When you consider how few patients with neuropathy carry a documented cause to their complaints, gluten may well account for a high number.